Our daughter Hailey was diagnosed with Leukodystrophy in 2011, a terminal brain disease. There is no cure or treatment. In January of 2015 she had a Pacemaker placed. There are medical bills, prescriptions not covered by insurance, Dr. Appointments out of state, and surprise expenses that would take a toll on any family. One way to share our story is to share jewelry we created together. There are many places we want to take her.
Each necklace signifies a Hug for Hailey.

Tuesday, December 18, 2012

It's been about 8 weeks since Hailey had her G-tube placed. When I was in my class to learn to care for a child with a g-tube they did not tell me that she would have to have this tube hanging out of her for 8 weeks. Everything I used in the simulation class was based on the "button." The button is placed 8 weeks after surgery and it's a low profile "button" that you attach the feeding tube to at the time of the feedings then un-attach.

The tube she has now is very cumbersome. It is pretty long and causes me great axiety. I am always afraid it's going to snag or get caught on something, not close all the way, get clogged...etc. We have had a handful of times when the adapter from the feed bag has un hooked it's self and there was stomach contents and formula everywhere. The button is suppose to make things easier...we'll see.

Hailey is scheduled to have the button on Thursday. It's not anything she will need to be sedated for, but I know she'll cry, she'll scream, and she'll fight. Last time the Dr. messed with her tube to measure it she fought and kicked and bled all over the place. I have seen way to much of my own child's blood.

Another thing causing me great angst is that the end of the year is coming up and our deductible starts over. We have applied for disability through social security for Hailey which we had been denied and we also applied for Katie Beckett that we have not heard word on. Our insurance will not cover Hailey's formula at 100%. Apparently that's not a medical necessity either?

I looked up the price of her formula and it's not pretty:

This is for a case of 24 cans. Hailey uses 6 cans a day. One case at 24 cans is $200 and will last us 4 days! $200 every 4 days! Now I'm not a math whiz by any means, but this is going to cost a small fortune.

If I didn't have high blood pressure before, I will or I do now. Maybe Josh more then me. I am doing research on getting this at a lower cost, but this is one of those supply and demand things. I think they sell this on Amazon also, but they can charge you what they want, you need it. What are you going to do? Can't go without...

So first I will worry about Thursdays appointment then I will go back to worrying about this.

Saturday, December 15, 2012

How do you miss someone who is laying right next to you? Hailey hasn't spoken for 4 months now. When it's me all day long with her I am the only one who talks. It's me, Hailey and 2 dogs and I only hear my own voice. Most of the day it's silent except for the tv. She used to talk ALL the time. She cries and she tries so hard to say things like mom and Josh.

That's a funny story. For those of you that don't know, Hailey has called her dad Josh and not dad for the longest time. She started out calling him Josh from the beginning. It was only until recently when she started going to school she started calling him dad.

I think that video is so funny. She did that all the time. If Josh was home but out of her site she called and called until he appeared.

Josh had told me a few weeks back that he didn't like looking at old videos of her anymore and I didn't understand why. I could watch them just fine...until now. Now I know why he can't. Just the other day I was watching a Hailey video with her and I couldn't stop crying. She used to talk and now she can't. Josh and I talked about if it would have been easier to have her be how she is now all along. I don't think I would have like that though. I love my video of her telling me she loved me right before we got to Salt Lake in September before she stopped talking. I can't watch it but I am glad I have it.

I guess it's true when they say the grass is always greener. What hurts less? You never having heard your child talk, or having heard her child be able to talk and then having it STOP.? I try everyday to work with her to speak again. I mainly work on her saying mom, or yes and no. When she tries really hard that is when the spasms start and we stop and she rests. The main way we communicate with her now is by asking yes or no questions. She moves her head so slightly yes or no when you ask her a question. I know how hard it is for her to try and speak but I can't bring myself to completely have her stop trying. She still laughs and smiles and it's mind boggling to think that someone can still laugh and smile having gone through what she has and is, but I am grateful she does. It's also funny she tries to be "naughty" just so we laugh at her. She will be laying next to me and try to grab the tabs off her diaper to try to take it off. If I make a big deal out of it she keeps doing it over and over. It's actually great OT with her using her hands...LOL!

So even though I miss her talking to me terribly, I am glad she once did. The silence really gets to me, and will probably drive me insane one day. I am glad I have all the videos of her even though they are SO hard to watch. I am starting to forget how she once was, what her voice sounded like. What sound her laugh made, because now it's so hard for her to do so. I am super glad I can hear her tell me she loves me on the videos even if she can't do it right now.

Thursday, December 13, 2012

Our friend Christina and her family invited us to go to Roos and More with them. It was a little ways away so we'd be in the car for about an hour to get there. Now that Hailey has this g-tube we CAN NOT be on time to go anywhere! We are always late...

At first I was apprehensive, I am always thinking about Murphy's Law and us. After all we go hand in hand. I know this is odd, but I kept thinking that the animals might attack Hailey if they smelled her formula. They didn't of course, but the thought still crossed my mind. We packed up our medical/diaper/personal bag and headed on out. On a side note, I feel like I'm carrying a suitcase every time we go anywhere with that bag. I need something more convenient. We started the iPad and put Hailey in her car seat with her shades.

Once we got there and saw all the cute animals I was more calm. We want to and need to do fun things with Hailey and she enjoys animals. We saw a camel, zebra, an owl, kangaroos, wallabies, and otters!

This is an albino Wallaby. So cute!

Another Wallaby and Hailey.

Josh even got in on petting the animals. Me, well I was fine just taking pictures.

They come right up to you!

Kangaroo!

Check this guy out. This is a real live Kangaroo! He's also a super star. He's been in commercials. He was HUGE!!

This was a teeny tiny baby wallaby. They let Hailey snuggle her.

Then it was time to see the Otters. Have you ever been introduced to Otters? They are NAUGHTY! They climb you, try to steal from you, chew on your loose clothing. They are pretty funny at the same time though.

STOWAWAY!!! One jumped into Hailey's basket waiting for a lift outside the walls of Roos and More.

Check this guy out. He is SMILING at the camera! These guys are such characters. I was glad that we did decide to take Hailey here and thanks to my friend Christina for putting it all together. We had a blast!

Tuesday, December 11, 2012

An issue that we never thought we'd have is getting Hailey in and out of the house safely. As I said before she has "issues" with bumps or changes in levelness...(is that a word?) Bumps in the road set off her reflexes and it scares her and then she cries. When I had a meeting with a home nurse agency they suggested a wheelchair ramp in case there is an emergency. If we were to get a home nurse that there should be 2 accessible exits (ramps would be best) and we didn't have one let alone 2. Josh racked his brain to think how we would get this done and how we would be able to even pay for it. I think insurance should have to pay for it, but since they don't even pay for bathing items seeing how they think bathing is not a necessity that wasn't going to happen. We were stuck. We didn't know what to do, or how to get it done.

A local construction company came to our rescue! They offered to help give Hailey a ramp to safely get in and out of the house. Josh had called me to let me know they were coming the next morning to start and that he'd be on his way to start to clear the backyard. My mom was over and she sat next to Hailey while I went outside to start to move bricks. My dad also came to lend a hand.
Josh got home around 7pm and my brother in law came over to help him. They had everything cleared in about 2 hours.

Backyard is ready for cement!

This was our backyard after we removed the bricks from it. We had it all ready for the crew to come in level it out and pour concrete. They would also pour from the side of the house to the front. Perfect for Hailey's chair.

They did everything in 2 days! They framed and leveled and the next day they would pour the concrete. I was so excited this was happening for Hailey. What a generous company to help us with this HUGE task that we had been worrying about.

Here are our old steps!

Time to pour the concrete!!

Removing the old concrete.

Leveling the backyard out after the concrete has been poured.

Everything looked great! We just had to wait until it cured and we'd be able to use it. You know how you don't know how much you use something until you can't?

The ramp works great! We are so thankful to have had this done for us. We were complete strangers who needed help and help came. Thank you to the crew and everyone involved that helped make this happen. It is truly appreciated and it means so much to us!!

Monday, December 10, 2012

I started using coupons right after Hailey was born. I wasn't "working" but I still wanted to DO something more to contribute. I found coupons, I learned how to use coupons and I applied what I knew and was able to gain a great stockpile of essentials. I am not an EXTREME couponer.

I did have quite the tower of TP going but be realistic. You will use toilet paper for years and years so why not get it for FREE? There was a point where you get burned out, but like any habit it's hard to stop. I did have to stop when Hailey got sick. We were able to use what I had on hand and not have to run to the store for little things like deodorant, toothpaste, and shampoo. Well Hailey's been sick for over a year and really needed more attention now then ever. I can't just leave her with a sitter to run to the store to grab something. Josh has a full time job then comes home to help with Hailey. By the time she is asleep at night where we can get things done around the house like dishes or laundry it's already almost midnight and we have to sleep sometime.

Even though my stockpile isn't what it used to be, I still have enough to help us get by until I can have a coupon day where I can shop for essentials. Using coupons is A LOT of work but for the most part there are people out there who write coupon blogs that pretty much tell you when something will be on sale and where to find the coupon for it, so that helps.

This was my most recent shopping trip that I was able to use coupons for. Both manufacture and store coupons and in the end my subtotal was -$0.40!
I ask all my family members for their coupons and I try to keep everything organized. I wish I lived in a place where we had a supermarket that doubled coupons or even tripled coupons. I haven't been able to coupon for actual food because it's not available where we live, but for now the soap, toilet paper, shampoo, conditioner, toothpaste etc. is a good start.

Wednesday, December 5, 2012

Today only, until midnight PST we will have 3 special winter colors on BLACK pendants available! I will have to limit how many we will be selling because I want to be able to get these out to you before the holiday! These aren't only "Christmas Colors" either! Check them out:

The cost on these are at $10 gift each! You can pick them up from me for no cost of shipping or shipping is $3.95 for up to 4 necklaces, $5.95 for 5+. Remember these are placed on BLACK pendants!

Winter Blue and Berry are solid colors while Holly has a glitter shimmer to it! To order just email me at HugsforHailey@live.com and in the subject line put Winter One Day Special. As long as I have your order before midnight PST tonight you will be able to get in on this offer.

If you need to stuff stockings or you are a secret santa in need of a gift consider sharing Hailey's story with others by giving a Hugs for Hailey Necklace!!

Tuesday, December 4, 2012

We were scheduled to go back to Utah in early November to Hailey get Botox injections in her calves. With the spasms Hailey always has her legs stick straight. Here is a picture of her feet while she is in bed with her "therapy dog" Daisy.

After the botox injections she will have to wear Plastic Boots called AFO's or Ankle-Foot-Othosis. They will stretch her to a 90 degree angle. We had to go to a prosthetic clinic to have Hailey fitted before we got to Utah.

Hailey was fitted by first takings molds of her feet which wasn't fun, then we had to go back to pick them up before we left to Utah. When the tech placed her feet in the splints Hailey was NOT a happy camper. Having her AFO's on are incredibly painful. It's similar to have super tight muscles and having some stretch and stretch them and not stop no matter how much you plead. :-(

We comfort Hailey with things she can chew on. She only wanted to chew on Josh at this point. Notice how she is holding his finger as she is biting down. What a good dad. It's not like she doesn't bite incredibly hard either. It HURTS!! We did get to the point where we were teasing her about biting daddy and she shot a smile here and there thinking it was pretty funny.

Of course lambie was there. We can't go to an appointment without our trusty sidekick!

So we got our AFO's and headed to Utah. Another long drive, another hotel room to sleep in, another night away from home. We have our appointment and Hailey gets her injections. She screams and cries. The doctor asks how we think she is depression wise. Um? I guess I never thought of it. She asked if Hailey got upset when she is around kids that are running around, if she gets upset that we can't understand her or what she's asking for since she doesn't speak anymore. She gets upset but I can always calm her down, but I guess depression is something to be expected. I just thought I would need medication before she does. She's such a trooper. To be put in this horrible situation and to still be able to smile. I can't imagine many if any people in her situation could do that. I don't think I could.

We discovered that we needed to invest in knee high socks! She wears them under her AFO's. She is better at wearing them, but I don't know when I will be able to get her to wear them 24/7. She wears them to school, but if she thinks about them being on her feet she cries and cries. I know they hurt, but I know they help. I just can't explain that to her. I don't want her to think I am just being mean. Then I think that there are kids that sick or not have parents that are "being mean" to them.

So we wear them as much as we can but she's not at the point where she is wearing them to sleep at night. We hardly get any sleep as it is I don't know when I want to try having her sleep all night with them...

Saturday, December 1, 2012

While we were in Utah after Hailey's surgery I found out that Happy Thoughts Bakery (a local at home cupcake bakery) wanted to have a fundraiser for Hailey. I was so overwhelmed with emotion that someone who I barely knew and who had never met Hailey wanted to do something so generous for Hailey and our family. Every time I thought about it I got teary.

Then all the vendors that donated items to the event was amazing. More people who did not know me or Hailey or Josh wanted to help. They donated time, they donated items they just showed up to drop off a donation. It was AMAZING!

There was a silent auction with some really great items!

Tons of fun things for kids!

We even brought Hailey down to make an appearance and she did GREAT!!

I want to make sure that I thank our Friends (New and Old) and our family members and everyone who was a part of Cupcakes and Hugs for Hailey. Everyone who donated items, helped spread the word, and came out.

Megan - You will always hold a special place in my heart for doing this for my daughter! Saying thank you will never be enough!